ID
40669
Description
ICHOM Paediatric Facial Palsy data collection Version 1.0.0 Revised: August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Paediatric Facial Palsy, the following conditions and treatment approaches (or interventions) are covered by ICHOM‘s Standard Set. Conditions: Congenital/Syndromic | Acquired Unilateral (single- and multi-territory) | Bilateral (single- and multi-territory) Treatment approaches: Medical treatment | Surgery | Eye care Physiotherapy/Occupational therapy | Botulinum toxin | Psychological support This document contains the Baseline - Clinical Form. It has to be filled in at Patient's first encounter/visit. Collecting Patient-Reported Outcome Measure: eFACE – Clinician. For more information see: Banks CA, Bhama PK, Park J, Hadlock CR, Hadlock TA. Clinician-Graded Electronic Facial Paralysis Assessment: The eFACE, August 2015. doi: 10.1097/PRS.0000000000001447 FACE-Q Kids. As there is a license for use of this questionnaire, the questions will not be included in this version of the standard set, only subscores. Snellen Chart – Clinician. PROMIS Paediatric Global Health 7 and PROMIS Pediatric Peer Relationships SF 8a. As there is an official distribution site, only the total score of these questionnaires will be included in this version of the standard set. For more information see: http://www. healthmeasures.net/explore-measurement-systems/promis/ obtain-administer-measures Reference: Butler DP, De la Torre A, Borschel GH, et al. An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy. JAMA Facial Plast Surg. Published online May 09, 2019. doi:10.1001/jamafacial.2019.0224 The Standard set of ICHOM was supported by the royal free charity and the Dianne and Michael Bienes Charitable Foundation Inc. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
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Keywords
Versions (3)
- 8/20/19 8/20/19 -
- 8/28/19 8/28/19 -
- 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder
ICHOM
Uploaded on
April 30, 2020
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License
Creative Commons BY-NC 4.0
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ICHOM Paediatric Facial Palsy
Baseline - Clinical Form
- StudyEvent: ODM
Description
Patient Demographic Factors
Alias
- UMLS CUI-1
- C1704791
Description
Inclusion Criteria: All patients Timing: On all forms Data Source: Clinical, parent-reported, or patient-reported Type: Single answer Response Options: Years and fractions
Data type
text
Measurement units
- years
Alias
- UMLS CUI [1]
- C0001779
Description
Inclusion Criteria: All patients Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical, parent-reported, or patient-reported Type: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C0079399
Description
Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative data Type: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C1548070
Description
Baseline Clinical Status
Alias
- UMLS CUI-1
- C0449440
- UMLS CUI-2
- C1442488
Description
Inclusion Criteria: All patients Timing: Baseline Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0427055
- UMLS CUI [1,2]
- C1314792
Description
Inclusion Criteria: All patients Timing: Baseline Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0427055
- UMLS CUI [1,2]
- C0925205
Description
Inclusion Criteria: If "1 = Unilateral" to FP_LAT Timing: Baseline Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0427055
- UMLS CUI [1,2]
- C0205092
- UMLS CUI [1,3]
- C0205146
Description
Inclusion Criteria: If "2 = Bilateral" to FP_LAT Timing: Baseline Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0427055
- UMLS CUI [1,2]
- C0238767
- UMLS CUI [1,3]
- C0205146
Description
Supporting Definition: Based on eFACE Inclusion Criteria: All patients >3y Timing: Baseline Data Source: Clinician Type: Single answer Response Options: Numerical value
Data type
integer
Alias
- UMLS CUI [1,1]
- C3846158
- UMLS CUI [1,2]
- C0427055
- UMLS CUI [1,3]
- C0439793
- UMLS CUI [1,4]
- C0034394
- UMLS CUI [1,5]
- C0449820
Description
Inclusion Criteria: All patients Timing: On all forms Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C0009488
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C1298908
- UMLS CUI [2,2]
- C2359476
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C3277906
- UMLS CUI [3,1]
- C0018787
- UMLS CUI [3,2]
- C1704258
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0042066
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0042066
- UMLS CUI [3,2]
- C3887504
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0424605
- UMLS CUI [3]
- C0851265
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0004936
- UMLS CUI [3]
- C0004930
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0009450
- UMLS CUI [3,1]
- C0040549
- UMLS CUI [3,2]
- C0012634
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0521362
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0521362
- UMLS CUI [3,2]
- C3887504
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0026860
- UMLS CUI [2,2]
- C3887504
- UMLS CUI [3,1]
- C0026860
- UMLS CUI [3,2]
- C1704258
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0205394
- UMLS CUI [2,2]
- C0037303
- UMLS CUI [2,3]
- C0024947
- UMLS CUI [2,4]
- C1704258
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C2709248
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3]
- C1709770
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0279810
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0279810
- UMLS CUI [3,2]
- C3887504
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0205470
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0205470
- UMLS CUI [3,2]
- C3887504
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0027853
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0027853
- UMLS CUI [3,2]
- C3887504
Description
Other
Alias
- UMLS CUI-1
- C0205394
Description
Inclusion Criteria: All patients Timing: Baseline Data Source: Clinician/Administrative data Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0030704
- UMLS CUI [1,2]
- C0184681
Description
Inclusion Criteria: If "1 = Yes" to TOCIN Timing: T0 Data Source: Clinician/Administrative data Type: Numerical value Response Options: Numerical value of years and fractions
Data type
integer
Alias
- UMLS CUI [1,1]
- C0030704
- UMLS CUI [1,2]
- C0439786
- UMLS CUI [1,3]
- C0001779
Description
Degree of Health
Alias
- UMLS CUI-1
- C0018759
Description
Supporting Definition: PROMs refer to patient-, parent- or proxy-reported tools Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C4038447
- UMLS CUI [1,2]
- C4277735
Description
Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0183370
- UMLS CUI [1,2]
- C0429537
- UMLS CUI [1,3]
- C4072785
- UMLS CUI [1,4]
- C0229089
Description
Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0183370
- UMLS CUI [1,2]
- C0429537
- UMLS CUI [1,3]
- C1690532
- UMLS CUI [1,4]
- C0229089
Description
Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0183370
- UMLS CUI [1,2]
- C0429537
- UMLS CUI [1,3]
- C4072785
- UMLS CUI [1,4]
- C0229090
Description
Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0183370
- UMLS CUI [1,2]
- C0429537
- UMLS CUI [1,3]
- C1690532
- UMLS CUI [1,4]
- C0229090
Description
Inclusion Criteria: All patients Timing: Baseline, 5 and 11 ages Follow-up Data Source: Clinician Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0002418
- UMLS CUI [1,2]
- C0220825
Description
Supporting Definition: Based on eFACE Inclusion Criteria: Age >3y Timing: On all forms Data Source: Clinician/Administrative data Type: Numerical value Response Options: Numerical
Data type
integer
Alias
- UMLS CUI [1,1]
- C3846158
- UMLS CUI [1,2]
- C0449820
- UMLS CUI [1,3]
- C0439793
- UMLS CUI [1,4]
- C0015469
- UMLS CUI [2]
- C0517048
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C4072785 (UMLS CUI [1,3])
C0229089 (UMLS CUI [1,4])
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